Real jobs for real people

The Wall Street Journal runs an extended feature on an employment program at Walgreen’s for people with disabilities.

The headline: “Erasing ‘Un’ from “Unemployable’: Walgreen program trains the disabled to take on regular wage-paying jobs”

Highlighted is 18-year-old Harrison Mullinax, who has autism.

“Mr. Mullinax works eight hours a day at a new Walgreen Co. distribution center, where he wields a bar-code scanner, checking in boxes of merchandise bound for the company’s drugstores. From his paycheck, he tithes to his church and sometimes treats his mother to dinner at Kenny’s, a local buffet restaurant. ‘It answered a prayer,’ says Mr. Mullinax’s mother….”

The distribution center employs 264 people, more than 40 percent of whom have various disabilities, and is 20 percent more efficient than the company’s older facilities.

“… an innovative program at the distribution center [in Anderson, S.C.] is offering jobs to people with mental and physical disabilities of a nature that has frequently deemed them ‘unemployable,’ while saving Walgreen money through automation.”

” … executives at Walgreen and the social-services agencies working with it believe the company’s program has a larger number of disabled employees, doing more-sophisticated work, than is typically available to people with mental and physical challenges. “

Paid registration required to view WSJ story.

Reaction to "Where's Molly?"

Blogger Kay Olson, who describes herself as a “thirtysomething disabled feminist,” reacts to “Where’s Molly?” in a guest essay on the CNN site. She says the widespread acceptance of institutionalization in years past is a tragedy that continues to stigmatize people with developmental disabilities today.

” … we’re still living with the legacy of those folks being segregated, made invisible, and devalued. It has impacted how we view developmental disability and the way we think of difference - we have all been taught implicitly by this history that people who are intellectually or developmentally different do not belong among us because they’re dangerous, completely incompetent and lack any ability to contribute to society. And those beliefs are not true.”

The tragedy is exacerbated, she says, by the fact that abortion was legalized before people with disabilities were able to be fully integrated into the community. As a result, she says,

“… fear and stigma are a bigger part of [reproductive] choice than they might otherwise be if acceptance and providing community resources and integration were a bigger part of our social history instead.”

Molly and Jeff Daly

From a new documentary featured on CNN:

In 1957, when Jeff Daly was 6 years old, his 2-year-old sister suddenly disappeared from his family.

For nearly 50 years, Jeff and his family lived their lives as if his sister had never existed.

One day, after both his parents had died, Jeff found the answer to the question he wasn't supposed to ask

Following records his father had kept, Jeff Daly learned that his parents had sent Molly to a state institution for the "feeble-minded" in Oregon shortly before her third birthday. He searched for her, built a new life that includes her, and then lobbied for a change in Oregon law that now makes it easier for families to locate people who had been institutionalized.

Now Daly has made a documentary film that explores his family's journey. "Where's Molly?" opens a window on the practice that led to the institutionalization of an estimated half a million children with disabilities in the '50s alone. More on the film can be found here and here.

CNN explores the history and significance of institutionalization in the 1950s and 60s, and traces the legacy of stigma and shame that is still felt today.

A new perspective on prenatal screening

Writing in Canada’s professional journal of obstetrics, representatives of the Canadian Down Syndrome Society raise strong questions about the ethical implications of recent recommendations that all pregnant women be offered prenatal screening for Down syndrome.

“Our vision is of a proud Canada where all are welcome, where diversity is embraced, and where everyone’s genes are valued equally.”

CDSS vice-chair Rhonda Grant and executive director Krista Flint define Down syndrome as “a naturally occurring chromosomal arrangement that has always been part of the human condition.”

They maintain that social constructs and belief systems have aligned to cause perceptions that DS is a birth defect or an illness, a perception they say is flawed. They draw parallels between Down syndrome screening and prenatal sex selection, saying both practices are rooted in cultural biases that cause inequitable treatment and reduced quality of life for the targeted group.

Among their recommendations:

• Professional education for physicians and health care providers about the reality of lives lived with Down syndrome.


• A broad-based effort to provide accurate and balanced information to pregnant women, both about DS specifically and also about the realities of life with a disability.


• The use of value-neutral language by doctors in discussing Down syndrome with patients.


• A comprehensive plan to put prospective parents in contact with support groups or other knowledgeable parties.

Grant and Flint note that two members of the organization’s 11-member board have Down syndrome, as do twelve members of a board advisory committee. They describe the advisory board members as “university students, entrepreneurs, artists, employees and spouses who share our concerns about the new recommendations from the Society of Obstetricians and Gynaecologists of Canada (SOGC) and the implications of those recommendations for them and other people with disabilities.”

The letter is published in the July issue of the Journal of Obstetrics and Gynaecology Canada (JOGC), Canada’s peer-reviewed journal of obstetrics, gynecology, and women’s health.

Is the workplace discriminating against parents?

Back in the day when my children were tiny, I worked 60-hour weeks as a senior editor at the LA Times Magazine. I depended heavily on the kindness of babysitters and preschool teachers, but the wheels pretty much stayed on the bus until Margaret was diagnosed with leukemia.

After that, it quickly became clear that my husband and I couldn’t manage two kids (one with both an intellectual disability and a chronic life-threatening illness) AND two high-powered jobs. If our family was going to survive, one of the jobs had to go. I left the Times -- a great loss for me, but one that seemed unavoidable.

Now that almost 20 years have passed, I often wonder whether the choices are less stark for parents who find themselves in similar circumstances today. Job or family? Family or job? Do people have to choose?

An in-depth story in today’s New York Times Magazine attempts to answer that question – and I guess I’m not surprised to learn things haven’t changed all that much for families despite the passage of landmark federal legislation. Or rather, things are much the same but a lot more lawyers are involved.

Writer Eyal Press introduces us to a woman who lost her job after her baby was born 16 weeks early, a man who was denied a request for time off to care for his ill wife and child, and a woman who was terminated after requesting a different work schedule so she could attend her son's therapy sessions. He traces lawsuit after lawsuit, discussing the issues in light of the 1993 Family and Medical Leave Act, the 1964 Civil Rights Act and the 1990 Americans with Disabilities Act.

Here’s how the headline frames the debate: “Do workers have a fundamental right to care for the families?” and “The latest front in the job-discrimination battle.”

Law grants new rights to European travelers with disabilities

The BBC reports that a new law passed by the European parliament will improve air travel for people with disabilities. Under the new rules, airlines will no loger be able to refuse to fly people because they have disabilities.

ADA anniversary, continued

Just 17 years ago, our family was so preoccupied with Margaret's medical and educational needs that we didn't even notice the passage of the ADA. Similarly, any improvements that the ADA may have made to Margaret's life were certainly not obvious to us, as we struggled to get her a decent education in a largely unresponsive local school district.

With luck, this blog will help me catch up on what I missed, about the ADA as well as other disability-related developments. Stay tuned.

Meanwhile, here are a few more documents relating to the act's anniversary.
-- Proclamation from President Bush
-- Statement from Hillary Clinton, pledging to expand economic opportunity for individuals with disabilities
-- Statement from John Edwards, calling for Congress to strengthen the ADA

On the 17th anniversary of the ADA ...

-- From the National Council on Disability: "two reports on the Americans with Disabilities Act (ADA) ... show that ADA implementation is not only possible and practicable, it is also good for business."

-- From Radio Iowa: Democratic Sen. Tom Harkin intends to introduce language to "restore the intent" of the ADA, which he says no longer offers protections to people with epilepsy, diabetes and cancer.

-- From WUSA-TV in Washington, D.C. -- Legal advocates say courts have eroded the rights of people by allowing employers to say a person is too disabled to do the job, but not disabled enough to be protected. Majority Leader Steny Hoyer (D-Md.) and Rep. James Sensenbrenner (R-Wis.) say they will co-sponsor new legislation to restore the ADA to its previous mission.

Disability = Taboo

TV personality Al Roker recently got in trouble for making jokes about people with epilepsy. Mark Aranoff, writing in the Chronicle of Higher Education, uses the incident to examine why, in his view, disability is the most taboo subject in American culture. Here's his conclusion:

"Taboos reflect the preoccupations of the societies in which they are embedded. Disability will be verbally charged as long as we are preoccupied with the physical and emotional perfection that few of us can aspire to. We will either get over it and accept ourselves, as the Dove soap campaign for real beauty exhorts us to, or, in a future more reminiscent of another Woody Allen movie, Sleeper, we will have plastic surgery and Prozac for all, greeting more-serious disabilities with an exceedingly awkward silence."

Mark Aronoff is a professor of linguistics and associate provost at the State University of New York at Stony Brook.

Democrats shift policy on abortion

Stephanie Simon, writing in the Los Angeles Times, notes that Democrats in Congress and on the campaign trail are adopting some of the language and policy goals of the antiabortion movement.

"In a striking shift, Democrats in the House last week promoted a grab bag of programs designed not only to prevent unwanted pregnancies, but also to encourage women who do conceive to carry to term.

"The new approach embraces some measures long sought by antiabortion activists. It's designed to appeal to the broad centrist bloc of voters who don't want to criminalize every abortion — yet are troubled by a culture that accepts 1.3 million terminations a year."

The story also notes the return of the Kennedy-Brownback bill, which disappeared in committee in the last session of Congress and was reintroduced last week.

"Liberal stalwart Edward M. Kennedy (D-Mass.) is working with staunch conservative Sam Brownback (R-Kan.) to mandate more support services for pregnant women carrying fetuses with genetic abnormalities, such as Down syndrome. Focus on the Family, an influential conservative ministry, praises that bill as 'lifeaffirming.' "

Millions for "wrongful birth"

Amara Estrada, right, hugs the wife of her attorney after the judgment was announced.
Photo from the St. Petersburg Times

A jury has awarded a Florida couple more than $20 million in what is being called a "wrongful birth" case. The parents had alleged that a geneticist was negligent in failing to prenatally diagnose their child's genetic syndrome. They testified that they would have terminated the pregnancy had they known.

" ... because the doctor works for the University of South Florida, the family will have to persuade the Florida Legislature to award most of the money. State law caps negligence claims against government agencies at $200,000.

"Daniel and Amara Estrada claimed in the lawsuit that if their first child's condition - a genetic disorder called Smith-Lemli-Opitz syndrome - had been correctly diagnosed, a test would have indicated whether their second child would also be afflicted ...

"But, they say, Dr. Boris Kousseff, who treated their first son, Aiden, after his 2002 birth determined that the child's birth defects were not specific and did not diagnose Smith-Lemli-Opitz syndrome."

Related links:

-- From the St. Petersburg Times, this story:

"From the moment their son was born, Amara and Daniel Estrada knew he would suffer. Baby Aiden had webbed toes, a cleft palate, low-set ears, a small head and genitals so tiny doctors had a tough time determining his gender..."

-- Link to the Smith-Lemli-Opitz Foundation website.

The next generation of bionic people

New Yorker staff writer Ben McGrath chronicles the life of Claudia Mitchell, a young woman who loses her arm in an accident and gets a bionic replacement. The story in the July 30 issue is available at newsstands, not on the Internet.

Schools beat back demands for special-ed services

Parents Face Long Odds Amid Cost Concerns

Daniel Golden writes in the Wall Street Journal about a national pattern of denial of claims for special education services, quoting disability advocates and parents.

They say administrative reviews in many parts of the U.S. overwhelmingly back school districts in disputes over paying for special-education services. State education departments, which have an interest in keeping down special-education costs, typically train or hire the hearing officers. Also, recent U.S. Supreme Court decisions and changes to federal law have made it harder for parents to win cases.

Although relatively few disputes between parents and school districts reach the hearing stage, the decisions set ground rules for how much extra assistance districts must provide disabled students, who comprise 14% of all public-school students. In recent years, schools have "mainstreamed" more students with disabilities in regular classrooms, hoping to benefit the children through interaction with nondisabled peers while saving money at the same time.

The battles reflect tension over the high cost of special education. In 1999-2000, the latest year for which figures are available, national spending on special education reached $50 billion, according to the Center for Special Education Finance, a nonprofit research group. In 2005-06, New York City's public school system alone spent $390 million on private education for disabled students considered unsuited to public school. Such tuition can cost $50,000 a year or more per pupil.

In China, children with disabilities are sold into slavery

A reporter explores the sale of children, often disabled, to work as beggars on the streets in China. The news follows stories earlier this summer about slave laborers, again often people with disabilities, who are forced to work in Chinese brick factories. How will these people be affected next year when Beijing hosts both the Olympics and Paralympics? From the (UK) Observer.

The Zeitgeist

Current reporting on the r-word

A regional campaign chairman for Rudy Giuliani has come under fire for using the word “retarded” when referring to the National Association for the Advancement of Colored People. Former South Carolina congressman Arthur Ravenel Jr. referred to the NAACP as the “National Association for Retarded People” at a rally in support of the Confederate flag in the year 2000. The Democratic National Committee has labeled the comment as “racist.”

From the Wall Street Journal:

“Mr. Ravenel said he wasn't sorry about his remarks but didn't mean to give offense to the retarded. He has previously said that he mistakenly transposed the name of the civil-rights organization with an advocacy group for the mentally disabled with which he worked in the past.”

The anecdote is part of a larger WSJ wrapup on the GOP’s political troubles in the South. The DNC has demanded a denunciation from Giuliani. A column from the Greenville, S.C., News is here.
______

Celebrity Courtney Love, visiting London, was quoted criticizing the recently enacted British ban on smoking in bars, workplaces and public buildings. From the (UK) Sun.

Said Love: "The only place I can smoke in England is the Houses of Parliament! That's so retarded!"

______

Stats, as of July 21, 2007

From Youtube.com
Videos with the keyword “retarded”: 33,900
Videos with the keyword “tard”: 4,420
Videos with the keywords “so retarded”: 518
Number of videos in the top-4-most-viewed that have the word “retarded” in the title: 1

From Urbandictionary.com
Number of synonyms for the word “retarded”: 50
Number of definitions for the word “retarded”: 31
Number of American presidents referenced in definitions of the word “retarded”: 2

Fetal medicine expert tells all

In an interview in the (UK) Guardian & Observer, fetal medicine pioneer Charles Rodeck tells us how things look from his side of the examining table. It's a sobering view. Rodeck is the founder and head of the unit for fetal medicine at University College Hospital, London, and was among the first physicians to pioneer fetal ultrasound in the seventies.

Among his revelations: doctors are increasingly being called upon by panicked parents to predict the level of disability that may be present in a child, and they are not equipped to do it.

... Unless a fetus is suffering from a particularly well-defined abnormality, it is impossible for a physician to predict how a condition will manifest itself in any child. "Our diagnostic abilities have outstripped our therapeautic skills," Rodeck said. "We now screen more women and can identify a huge variety of abnormalities, but we still can only treat a minuscule fraction...."

"... I have to tell parents all the time that just we don't know or can't predict exactly how their child will be affected by any particular condition," he said. "Often we can't even give a name to the abnormality suffered by a fetus...."

Rodeck also offered stiff criticism to the commercial IVF industry, which he characterized as "very competitive."

"Some clinics try to keep a step ahead by offering more interventions than their competitors, even if they know these procedures are uproven and may not work. This can become exploitation..." He said he is particularly concerned about a growing number of pregnant women he sees who have been prescribed unnecessary, unproven and possibly harmful drugs by private clinics.

The full story can be seen here.

Kuwaitis reported biased against Down syndrome

The Kuwait Times reports that Kuwaitis "attach a myriad of prejudice to people living with the Down syndrome." Among the anecdotal evidence cited: parents who subject children to multiple plastic surgeries to disguise their appearance, and parents who tied their child's hands and kept him in the basement as punishment.

A teacher is quoted as saying: "Some people fear them. Others reject them and don't accept them. There is a lot of rejection."

The link to the story is here.

Parallels between sex-selective abortions and selective terminations

Taken together, this story and the accompanying letter to the editor present a parallel to prenatally diagnosed disabilities and termination.

First, the story:

India tries to stop sex-selective abortions. New York Times. Link here.

"Last year, a study by The Lancet, the British medical journal, reported that up to 500,000 female fetuses are aborted each year in India, leading to the birth of nearly 10 million fewer girls over the past two decades. Experts say that sex-selective abortions in India reduced the number of girls per 1,000 boys from 945 in 1991 to 927 in 2001."

Now, the letter. Link here.

"India’s latest proposal to stop sex-selective abortion regrettably overlooks a root cause of the discriminatory practice ... Until the Indian government adopts and enforces laws and policies that promote education for women, eliminate discrimination in the family and the community, and ensure women’s access to safe reproductive health services, it will continue to disempower its women."

To connect the dots: In societies in which people with disabilities are not being provided with adequate education, health care and other needed services, couples look to termination to avoid personal heartache. The net effect is a practice that continues to foster discriminatory attitudes against a historically stigmatized group.

Unkind words wound people with disabilities and their caregivers

Hello, all. I'm back after a brief vacation.

Check out this morning's USA Today for responses to its recent column about the widespread use of the word 'retard' as an insult. The columnist, USA Today reporter Theresa Howard, made the point that the use of this common slur diminishes the dignity of the estimated 7.5 million Americans who have intellectual disabilities as well as their families.

From today's letters:

"I just don't understand why many people avoid using racial slurs but somehow think it is OK to use 'retarded.' I know that in the vast majority of situations, people are not trying to be mean; they're just oblivious. Hopefully, commentaries such as Howard's will raise awareness of just how inappropriate it is to use degrading, insensitive terms in casual conversation. Perhaps people will begin to understand that they are being disrespectful to those who have developmental disorders and to the families who love them."

Couldn't have said it better myself. The letters can be found here.

Sadly and predictably, there are also many foolish and insensitive comments now attached to the original column, including some from writers advocating for their right to free speech -- an odd and paranoid twist, considering that Howard was arguing for civility, not censorship. (Navigate back to it here.)

From In These Times:
Genetic Disorder: Parents with limited incomes are being denied access to genetic tests and the counseling that experts say should accompany them

From Boston Globe: With rise in autism, programs strained

From the Times (UK): Couples are 'driven to IVF tourism by ethical disparities across Europe'

From ABC (Australian Broadcasting Corp.): Stem cell research boosting women's egg trade

From Fox News: Infanticide, abortion responsible for 60 million girls missing in Asia

From the American Medical Association News: Confronting eugenics: Does the now discredited practice have relevance to today's technology?